help needed aps/neurology

Hi all i am so frustrated with the system at the moment i really hope you can help. I am under two neurologists who have basically admitted i am out of their level of expertise and one i saw 6 wks ago (who i must add was a neuro ophalmologist!!)he would refer me to a specialist who deals with the auto immune problems that affects the eyes, however i have today found out he hasnt done so and hes just asked to see me again in 4 months time ??? My GP has today said the neurologist has put my eye problems down to 'unexplained neurological disorder' and told me that neurological problems are untreatable, i am warfarinised to the max and basically there is no hope if im still having stroke like episodes. I am gutted and heartbroke at the moment and feel like giving up. My physiotherapist has confirmed muscle wastage and signifacant left side weakness and advised me to be reviewed by a neurologist however the two i am under will be no good to me i dont think. Does anyone know of a neurologist who specialises in the neurological manifestations of APS in London who i can pay to see if needed or a name i can pass on to my GP to get referred to. I have exhausted Birmingham - the Lupus excellence ctr there just referred me to heamotology who dont think it is vascular related and left me to be treated by neurology who dont know enough about the condition so im lost. My eyes are fine and healthy - it is the brain not supplying the eyes that is the problem, and now my muscle spasms have now turned in to twitches and judders. I dont know whether to risk another appointment wasting my time to see an immuno opthalmologist who will tell me my eyes are fine from their point of view or just to giveit a miss and pay privately if needed to see someone who specialises in the neurological side of it and see if that same problem that is affecting the eyes are affecting the rest of me sorry its a long one xxxx

14 Replies

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  • Hi there, you need to ask them to refer you into St Thomas' Hospital that is where the expertise is! Let us know if you need help with this. Others on here will have specific people they have seen at that hospital who are better placed with the detail to your needs. I am so sorry it is so stressful. Once you have been there, they will teach 'Birmingham, and your GP the finer elements of what to do to help you. Kind Regards. Mary F x

  • Thank you - I want to go tlondon i think - but given past experiences of appontments im really worried that ill get there,spend the whole appt with someone looking through my notes to then tell me they'll do tests which always come back negative and then the'll tell me i need to be referred to somewhere else!!! Do they have neurologists as part of the aps clinic do you know?

  • I am sure there will be someone there who can help. Whilst you await the appointment in London, which SHOULD be marked urgent: In the first instance telephone kate Hindle at the Hughes Syndrome Foundation and see if a name comes up, her knowledge is great. Second thing, write in bullet points your entire medical history! I am seronegative with multi disease so I understand. Your own notes will be instrumental in helping. Also there are plenty of medical papers on the HSF website, there is probably one there that you could give you current neurologists, who at least are trying to help, and will help further once you have been to St T's. Don't give up, believe me you are nearly there with this. Once you have a name either from Kate Hindle or someone on here with similar problems... to you ... who is at St T's... that will act as a referral point for them. Mary F x

  • Professor Khamashta would probably be a good starting point, here is the info for your neuro's: guysandstthomas.nhs.uk/our-...

    Keep in touch, and let me know how you are progressing. Mary F x

  • Hi thanks again for your help, im going to take dr khashmata and prof o cruz' name to my next neurology appt and see if he'll refer me on. my GP has today advised me to take 75mg aspirin aswell as the warfarin and see if that helps. Hes of the opinion that im already warfarinised to the max and anything above will be dangerous and the problems i have are neurological (and confirmed by my physiotherapist)and therefore it doesnt matter where i go or who i see nobody can treat it. Its untreatable and I have to just live with it - so another hope dashed and a few days to lick my wounds and im sure ill find some way of dealing with it and waiting for yet another appt !! xx

  • Ok, well plenty of support and friendship on here, and good luck with the appointments, St Thomas, may have some more tools in the box for you, they do really have some very complicated patients! Mary F x

  • Good idea to try adding the aspirin. Aspirin inhibits the platelets and warfarin inhibits the clotting factors, both combine to form a clot. I take plavix(another platelet inhibitor)and lovenox (another clotting factor inhibitor). Hopefully this addition will improve your symptoms.

  • Hi Emma.

    I just wondered what your target inr is ? Xxx

    Sorry I'm not very coherent this morning but my target is between 3.5 to 4.5 as ate a lot of other Hughes people are too. Sorry if you already know this.

    I hope you soon get answers

    Hope the aspirin helps.

    Love Ally xxxx

  • Hi Emmaj

    I don't have any personal experience of St. Thomas' but other on here speak highly of it.

    I have seen Prof Hughes, privately, at the London Lupus Centre, London Bridge Hospital, in fact I had a follow up consultation with him yesterday, and I can't recommend him highly enough.

    He and I talked about neurologists, yesterday, and he agreed with me that many are far too sceptical about APS. The do not seem grasp the concept that in APS patients there is certainly clots - they do understand that - but that we also can suffer from widescale 'clumping' of the platelets, which makes the blood sludgy and causes widespread symptoms and that they seem unable to grasp, in my experience; I've had two now who have been sceptical to the point of frustration for me.

    Good luck and best wishes.

    Dave

  • Hello there, I agree with Dave and Mary. I have see both Profs Khamashta and Hughes and would recommend both.

    As for being told "live with it" or "there is nothing that can be done" and all those types of things...well, had I listened to all of that I would probably not be here right now!! You have instinct, just like I had instinct and its telling you something which is important. Go with your gut and dont give up until you find somebody who will listen to you and in my experience it will be either of the two individuals I have mentioned. In fact Prof Hughes catch phrase is "you must always listen to your patient".

    You are nearly there, so dont give up. Let us know how you get on :-)

  • Hi

    Have you been tested for NMO which is a neurological condition that effects the eyes? I would say the neuros at Queens Square (Hospital for Neurology are good) but they aren't really clued up re APS my neuro works there and my local hospital and if I mention APS/Hughes he dismisses it with your hematologist deals with that. Might be worth seeing if any of the neuros at St Thomas's deal with NMO .

    Hope you get on okay and as Lynn said Let us know how you get on

  • Hi

    I see Doctor Paul Holmes at Guys. I have APS and cognitive dysfunction with poor memory. He is hoping to send me for cognitive re-training which should help my memory as well. He certainly listens to me and puts my mind at rest even if he can do nothing else. I think I was referred to him by the Lupus unit at St. Thomas' Good Luck.

  • Hi Emmaj just wondering if you have muscle wasting in arms and if this was caused by a vaccination?

  • hi, I do have some wastage according to my physio,but it was put down to cerebral aps x

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